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Monday, 29 September 2014

1. Wake up your patients very early to take their blood pressure, their temperature and to measure their heart rate. This should never be later than 6am

2. Do not take any notice of previous readings. Pretend this is the first morning you've woken them, not the 27th (In my case. God that's depressing, I wish I hadn't actually counted.)

3. When already low blood pressure reads a smidgen lower - due to the patient's extremely recent sleepy status - panic. Remember it is your duty to report this as though it is an unusual event. Even though it's the 27th time it's happened. And clearly caused by the fact that until 23 seconds ago, the patient was happily dreaming.

5. Only once you are sure there is no chance at all of the patient going back to sleep should you look at previous readings and conclude. "Her blood pressure IS usually very low." As the patient has been assuring you for the last 45 fraught minutes.

6. Remember, if the patient should become in any way frustrated or cross about this and is unable to hide this irritation due to their extremely recent sleepy status, point out that it is for their "own good." In most cases, this will make the patient compliant, however, if they remain upset, you MUST make sure you mark "patient aggressive" in their notes.

7. Repeat daily.

NB : Should patients with low blood pressure suddenly show "normal" readings, you must NEVER take into account that for that particular patient, this means they are around 50% higher than usual. Even when patient is actually having a stroke, NEVER listen to them, simply reassure them their obs are "fine."

Friday, 26 September 2014

How often do we hear of waste within the NHS? Barely a week goes by where some distant politician doesn't remind us how very inefficient our health service is. In fact, it isn't and the latest international survey found that it was actually the 2nd most efficient health service in the developed world. We spend just 9.2% of our GDP on healthcare, whilst the average in other countries is 11-12% (WHO)

But I don't think I've EVER heard anyone ask a patient about waste. Can you ever remember seeing a panel debate on Sky, BBC, ITV or C4 news discussing healthcare that included an actual patient? Someone who uses the system and sees a different perspective? God forbid we should ask the people who actually have to use the system, what would they know?

Well, actually we know a lot. We see the medicines opened for just one dose, then thrown away. We see the extortionately expensive £1,000 bags of liquid feed thrown away because no-one thought to put them in the fridge, rendering them useless.

Recently, I watched a Netflix documentary about a brilliant brain surgeon who went to give a lecture in Kiev back in the 80s. He was so appalled at the lack of specialism and facilities, that every year since, he has returned to Kiev and carried out as many of the most complicated cases of brain surgery he can fit in.

He crams his suitcases with equipment and devices that just aren't available to ordinary people in Kiev, equipment that we would use once and throw away. He risks the wrath of the Russian authorities with every case he takes on. One mistake and he felt there was little doubt he'd go to jail. The doctor he works with in Kiev has already been suspended twice for helping him.

But there was a moment, when the doctor from Kiev showed the drill he used to get through skulls. It was an ordinary Bosch hardware drill and he explained that the drill bit was one the UK doctor had bought over TEN years ago and he'd been using it ever since. The UK doctor estimated that just on those drill bits alone, each one used once and then discarded, his hospital spent £40,000. That's one instrument of very many used by one surgeons every day, up and down the country.

A few days ago, I finally had the line fitted into my vein that they would feed me through. It is done in theatres under strict sterile conditions. The Dr inserting it mentioned that the scissors he was using were "one-use". They appeared to be very sturdy, stainless steel scissors, very similar to the ones you can buy for home haircutting. Even in the stores, these are expensive, around £12-£20. Anything bought through the NHS - perversely for an organisation with such huge procurement power - seems to cost 3 times more than the high street equivalent. He snipped through one sterile plastic line with them and that was that. They didn't even touch my body or blood.

So why do we do this? Surely things like scissors and drill bits and scalpels can be effectively sterilised to use again? Sure, we don't want surgeons using blunt scissors or drill bits but one-use???

We do it, because at some point, a very serious condition has been found to be transferred by re-using anything used in a sterile environment. The results may have been statistically imperceptible, perhaps just 2 or 3 cases in a million, but because of that, every last implement must be disposable. So, for instance, we might make sure that every single surgical pack used is thrown away after use, because 2 people were infected with CJD ("mad cow's disease") at the peak of the public interest over it. Even when we can be totally sure that whatever bacteria or virus causing a certain condition is killed under sterile cleaning, the chance that somehow just one scalpel or pair of scissors misses the bleach-bath means that we waste another few billion per year.

There have been several studies into how many "avoidable deaths" there are in the NHS every year. Results ranged from 10,000 to 40,000. The most recent was thought to be the most accurate, using the most detailed methodology and it put the figure at 12,000. The majority of those deaths were due to understaffing or under-resourcing. If we could save, say, even half of those lives for the sake of 2 or 3 aren't we peculiar not to?

Ethically, this might be a difficult question, but as a nation, are we prepared to accept risks many, many times smaller than, say, being hit by lightening twice or winning the lottery, to save many billions of our tax money from literally, being thrown away? And if that minuscule risk means that we take much, much smaller risks with lives in other areas by providing a better funded service to every member of the public rather than legislating for the exception rather than the rule, might the public choose to accept it?

Perhaps this isn't something the NHS or it's staff should decide. Perhaps we should have a public debate and allow everyone to have a say?

NHS managers are making difficult decisions every day as they try to cut vast sums from their budgets without affecting patient care. Perhaps very expensive cancer drugs that can only extend life rather than save it become unavailable, or patients are discharged to soon. If this measure could save many billions of pounds every year, should we not at least consider it?

Wednesday, 24 September 2014

2. Ban smoking outside the hospital or anywhere in the grounds. Because it's bad for you.

3. Assue they will give up smoking during one of the most stressful times of their life.

4. Ensure already weak patients with dubious immunity have to walk as far as possible, leave the safety of the security staff and are exposed to all weathers and germ-ridden public. Because clearly, that is much better for them.

Tuesday, 23 September 2014

From my recent posts and tweets, it's clear some of you are beginning to think I'm staying in a hospital from a Carry-On film without the wit.

However, there are a thousand different clues that tell you whether a hospital is well run or not and I truly do think this one IS well run. For all the faults and mistakes, I'm still convinced they are due to under-funding and under-staffing, not incompetence.

A patient-centered hospital listens to the little things and improves them. Each time you are admitted you notice details that used to frustrate you have been dealt with. I used to wait endlessly for the ward door to be unlocked when I went downstairs for a cigarette. Sometimes I honestly began to worry that I'd have to sleep outside in the corridor. This stay, it is always answered within 6 rings of the entry phone.

There are 2 large TV screens in the foyer. One announces "You told us..... (insert complaint) The other explains what they did to put the problem right.

Last stay, I used to feel quite intimidated if I had to take a lift with a male night worker on my own. Now, unless it's just coincidence, they step out if there's no-one else around.

I used to find some of the guys on the security desk a bit rude. Again, if I wanted to go out for a cigarette at night, I would have to press a button for them to release the door. Sometimes they just wouldn't bother and I'd wait outside indefinitely, although I could clearly see them sitting at the desk. One of them had a little power trip and wouldn't let me go out of the back door to the relative privacy of the taxi rank, but insisted I brave the onslaught of the very main road at the front of the hospital, always busy with passing drunks around about midnight. That has all stopped too. They no longer question me on who I am or where I'm going, which seems reasonable, as I always imagined with frustration that the pyjamas, wild hair and drip stands kind of gave my patient identity away.

Pain relief is an absolute priority here, unlike my old hospital. No matter how busy they are, I rarely wait for more than 15 minutes and it takes nearly that long to find another trained member of staff, find the keys to the controlled drug cupboard and draw it up.

If all goes wrong, the ward sisters (on the whole, apart from my unfortunate experience) are there to be patient advocates and I've often heard them tearing into pharmacy or an unfortunately hapless doctor on our behalf.

I suppose the point of writing this post is to say that if things are so bad for me here at a renowned teaching hospital with a very healthy focus on patient care and improvement, things will almost certainly be worse in most local hospitals around the country. In my experience, this kind of focus on patient care is quite rare. I have refused point blank to go to my local hospital for many, many, years now and have made 2 or 3 hour journeys vomiting all the way, just to avoid putting myself at their mercy.

I think it's too easy to blame poor management or lazy staff. If the staff don't appear lazy, they can't be. If the hospital seems well managed, it probably is.

But the NHS has been ordered to save £20 billion over the course of this parliament. Most people don't stop to think about how much money that actually is. It's 20 THOUSAND MILLION POUNDS!! There are only so many biscuits you can cut back on on the tea round. The NHS has never been adequately financed in the 25 years I've been an in-patient. The only time I've been on a fully staffed ward was in 2007 after 10 years of extra Blair money. It runs to the absolute bone. 20 thousand million pounds will affect care and outcomes, there's no way at all anyone can argue that it won't.

Monday, 22 September 2014

I think I'll make this a series. If you pointed every logic-fail out to the nurses, you'd be talking forever.

So to kick off, Patient Rest Time :

1) Enforce a patient rest time between 1pm and 3pm. Switch off all the lights and close all of the blinds there and then. Even if everyone in the bay asks for them to be left open, do not allow this. Use whatever means necessary to assert your authority.

2) Once you're sure it's completely dark, deliver lunch.

3) Make sure that staff do not modify their behavior in any way and that all 20-30 are having to shout at once to hear one another in the corridor. In fact, this is also a good time to hash over last night's tequila related incidents.

4) Schedule all blood tests, physio sessions and dietitians between 1pm and 3pm

5) Remove lunch uneaten from those who actually managed to sleep through the cacophony.

Saturday, 20 September 2014

If you want change, make sure this post goes viral and don't allow vested interests to stop you. The time for talking is over. The time to save the NHS is now. Don't close this post without being the change YOU need.

Following my post earlier on the disastrous understaffing of the NHS at the moment, many people have said to me "But what can we DO?"

Did you know anyone can walk into parliament and demand to see their MP? Whatever debate he or she is sitting in, they must be bought to you?

I would organize as many people as you possibly can in every constituency to turn up at your next MPs surgery and refuse to leave. Thousands of you. With every MP in the country under lock down, the issue would have to be solved and solved immediately.

Anyone who's MP doesn't even hold a local surgery, get up to Parliament (or ask a proxy to go in your place if you're housebound or find traveling impossible), call your MP to the lobby and do the same.

Organisations with good networks like unions, charities, voluntary groups and governing bodies could organize this within a week, the NHS could be safe within 2.

But I can't do everything. If you want this, do it, it's as simple as that. If you really want to save your NHS, get off the sofa and save it.

If you want this enough, send this post viral. RT it, share it, email it - even hand it out at your local supermarket - whatever it takes to spread the word.

All it takes is unity and will.

As dear old Nye said "The NHS will last as long as there are folk left with the will to fight for it."

I really don't think I can put this off any longer. My very reason for being for the last 2 decades has been to expose and improve patient care, to truly show the general public what being a patient is really like.

But some of my longer term readers will remember all too vividly what happened the last time I dared to blow a whistle on my previous hospital. But they only know a fraction of what actually happened, as I was unable to write about it publicly for legal reasons. If I say it resulted in an attempt to threaten the custody of my children, you probably don't need to know the rest.

But I've always believed that fear is never, ever a reason not to do something. (Other than bungee jumping, obviously)

If I listed the catalogue of disasters I've experienced on this stay, this post would be 10 pages long. Possibly 20. So I'll focus on just one area - my nutrition. Just remember that if you think this is bad, every other area of care is equally under pressure.

I came in 18 days ago severely malnourished. My weight had dropped to just 39 kilos - 6 stone. I simply couldn't keep enough calories in before they escaped ferociously from one end or the other. The pain had become constant and intolerable and I could spend whole days vomiting over a bowl.

On admission, A&E set up a drip - my blood results showed I was dehydrated too - unsurprisingly. They put me nil by mouth overnight until my own doctors could assess me in the morning.

The fluids ran into me happily, running out the next morning. Despite constant queries, no new bag went up. For 12 hours. Then 24 hours. I couldn't even get anyone to flush the cannula. The sticker on it said "remove Friday", by Sunday, I couldn't even get anyone to do that and it was at stage 5 of a 6 stage infection scale. I took it out myself.

The first day, I obviously hadn't ordered any food and I tried absolutely every way I could think of to get some. But somehow, I never did. The next morning, still no menu slip and I was determined to get fed this time. I kept on and on until the lunch trolley actually arrived - with nothing for me. Cue meltdown number 1 and a miserable blub to the ward sister. Critically low weight and 48 hours with no food will do that.

The ward sister assured me I could get a "snack box" sent up anytime at all, I only had to say. I asked her why it was that hadn't happened so far, but she couldn't seem to answer.

Every single time I've been admitted at this weight, I've had to be fed into my central vein. (TPN) This time, no TPN materialised. When your bowels are in the kind of crisis mine are, you simply have no choice but to circumvent them. But there are a few catches. Firstly, TPN is eye-wateringly expensive - £1000 per bag, per day!! Secondly, you are at an extremely high risk of infection directly to your heart. No-one prescribes it for fun. But as I need surgery, I simply have to get a balance of nutrients beforehand or I'm unlikely to survive it.

A lovely dietician came and ordered me extra high calorie, low residue snacks to come up - smoothies, hi-cal jellies and mousses. But they never arrived. Today, 15 days later, I still haven't managed to track them down.

There used to be a special menu that people like me could order from with hi cal "extras" to supplement the hospital food. Despite asking and asking for it repeatedly day after day, that didn't appear either. I got a halal/kosher menu, but had to explain that wasn't quite what I meant. Again, 16 days later, it still hadn't appeared.

By the end of the second week, I'd LOST a kilo. A kilo I could ill afford to lose. The only reason I was dragged kicking and screaming into hospital at all was to avoid further weight loss.

I asked for extra salt & sugar sachets from the tea trolley to at least provide my own re-hydration fluid, (I'm extremely self sufficient and where there's a will, there's usually a way) But I couldn't get those either. I asked and asked when I might get TPN, but today, I still don't have it arranged.

By Monday evening I had reached my limits. Still dropping precious ounces, I believed I was safer at home. I walked out, got in a taxi, then a train, and just went home. They'd been promising me I could go home for a few days while I waited for my next procedure for over a week, but guess what? They somehow kept not getting round to confirming it.

I left at 6pm, and left a note to explain with another patient, as I didn't actually want to worry anyone or - God forbid - trigger any police searches. I asked her to give it to a nurse at the 10pm drug round, figuring it would be too late by then to do anything until the morning and I'd get at least 24 hours with my babies. I was all the way back in Sussex by taxi and train before anyone even realised I'd gone.

The landline finally rang at 10.30pm and it was the ward sister. Dave answered the phone as I was way too traumatised to deal with anything myself. She spent an incredible 15 MINUTES telling Dave off for my breach of protocol. She clearly kept interrupting him as he had to calmly repeat several times "Excuse me, I hadn't finished talking." At the end, he asked

"So you're the ward sister, is that right? In charge of my wife's ward?"

She said that was correct

"So in 15 minutes, you haven't asked me once about the wellbeing of your patient? You haven't asked me if she got here safely, or how. You haven't asked me if she has the meds she needs to get through the night, or if she's OK. And most importantly, you haven't asked me what pushed her to such extremes that she walked off your ward, something she's never done before in the 20 years I've know her?"

Funnily enough, she didn't seem to have an answer for that.

I called the doctors first thing in the morning to see when I needed to be back for my procedure (colonoscopy) They finally had a date for it (the Thursday afternoon, it was Tuesday morning) and told me I had to have nothing but clear fluids until then.

On the Wednesday, I dutifully returned in time to drink the 3 LITRES of highly unpleasant laxative you have to take the night before. The sister at admissions told me I could have been eating a light diet right up until then. I asked if there was any reason I couldn't eat something there and then and she said I could. (Another 24 hours of pointless lack of nutrition.) I speedily found a restaurant and ordered a piece of plain grilled fish.

By the Thursday afternoon at about 3.30, colonoscopy done, I was allowed to get back to the ward, and I was so hungry I could think of nothing but food. I asked for one of the oh-so-elusive snack boxes, but the nurse said I had to wait for the supper trolley. (usually about 5-5.30pm) I was so exhausted from the endless battles (not to mention the king-size dose of sedative I'd had for the colonoscopy) that I just accepted it.

When the trolley arrived, I pointed out to the person serving that I didn't have an order in, as I'd been nil by mouth that morning. She told me I had to wait for everyone else to have their food and then they'd see what was left. I said anything but brown bread would be fine. Watching everyone get food was almost more than I could bear, but finally, I saw her coming back with a tray. It was a brown bread cheese sandwich.

Cue epic meltdown. I texted a friend who was in London and due to visit me a little later. Could he come now? I was starving, (literally) had no money and no cash card.

He got to me in less than an hour, let me cry for a full 5 minutes on his shoulder, took me for a hot meal and stocked me up with food I could keep by my bed. After he'd left, I found £20 he'd tucked into my teabag box, the one place he knew I would see it soonest. (I'm rarely more than an hour away from a cup of tea)

So the final question is, what has led to this catalogue of failure? Is it incompetence? Cruelty?

I don't believe it is. I have barely had a single nurse who wasn't competent and kind. There simply aren't enough of them. in the 20 years I've spent an average of a month of every year in hospital, I haven't experienced staffing levels this bad since 1995. They simply don't have the time to do all of the jobs they need to. To be more accurate, they don't even have time to get through the very basic tasks of ensuring patients have nutrition, fluids, cannula care and a referral to a doctor.

Remember, I'm in a specialist and admired teaching hospital with access to funding streams local hospitals don't have.

For the record, David Cameron needs to know thatpatients are at severe risk. Mistakes are inevitable and it's only a matter of time before our healthcare reaches crisis. Personally, I believe it has already. He has pushed a system that was already at its limits (and quite a long way beyond them) over the edge. Goodness knows what will happen when winter comes and admissions rise. There is no more time for talking, reviews, conferences and marches. If we want to save the NHS we have to do it TODAY. We must not take no for an answer. If we don't, it will soon be YOUR Mum, YOUR sister, YOUR child or grandson who suffers. Saying I told you so when it's too late, will be no consolation to me at all.

Thursday, 18 September 2014

As the Scots go to the polling stations today to make the most important UK constitutional decision for centuries, I shall stay right out of the frenzy.

However, i'm not sure if I came up with the following idea myself or am plagiarising it unintentionally, but it seems to me, that in fact, we should just insist on independence for Westminster.

Why on earth don't we just cut them adrift to govern no-one but themselves? It's what we all seem to want after all. Scotland insists they have nothing against the English, Welsh and Irish, but everyone agrees that governance from Westminster is bad for them. Scotland, Wales, the North, Cornwall - even the Isle of Wight.

Westminster appears to be able to perform the impressive trick of being unable to govern effectively or fairly for anyone at all. Except perhaps the metropolitan elite of Chelsea or Kensington.

Can we not just leave them to it, devolve greed, incompetence and feudal servitude to them, so that the rest of us can get on with deciding our own futures?

Last week, the excellent John Pring published an article that seemed to show that the new Employment and Support Allowance (ESA or "sickness benefit") was twice as easy to claim as the benefit it replaced (Incapacity Benefit or IB)

Under IB, just 32% of claims resulted in an award of benefit, yet latest figures show that 73% of clams result in an award of ESA.

Firstly, clearly ESA is not easier to claim than IB. firstly, the criteria are much stricter than the old IB criteria. Also, if it were easier to claim, the overall number of claims would have risen steadily since its introduction. When the benefit was introduced, around 2.5 million people claimed IB. Today, around 2.5 million receive support. So for all the pain and misery of the new Work Capability Assessments (WCAs) nothing at all has changed.

So what is happening? I've read several theories, but I don't think they've explained such an apparently dramatic rise.

We do know that Atos, the French IT company responsible for carrying out the assessments on behalf of the DWP have been struggling with increasing backlogs since the start. They have been forced to increase the number of assessments they do every month. At first, it was just 25,000 per month, at it's highest, Atos were doing around 130,000 per month. As the rate they were expected to assess people increased, backlogs increased with them until today, a whopping 700,000 are stuck in the "assessment phase". Once Atos walked away from the WCA contract (possibly last September, but only confirmed publicly this May) the assessment rate has dropped dramatically increasing backlogs still further.

The only way you can be found fit for work is through a face to face assessment. Only a fully trained doctor can decide a claimant qualifies on paper alone. This means that the evidence on a claimants form and the corresponding evidence from their own Drs makes the decision so clear cut that a decision can be made without the need for a face to face assessment. (WCA) Perhaps someone with cerebral palsy who cannot mobilise, feed or speak independently or someone with terminal cancer Of around a thousand Atos HCPs (Health Care Professionals) very few are actually fully trained doctors. Most are nurses, physiotherapists or other healthcare professionals.

Thanks to HCPs who have been prepared to whistle-blow to me in private, I've known for over a year that Atos were attempting to clear backlogs by getting the trained Drs to do as many paper-assessments as they could. They were asked to work weekends and overtime and all Drs were pretty much flat out doing as many as they possibly could. A doctor can then decide that the claimant qualifies for either the long term Support Group or that they will be able to work again at some point in the future, hence qualifying for the Work Related Activity Group (WRAG) Remember, however obvious it may seem on paper that a claimant will not qualify, they cannot be found "fit for work" without a face to face assessment (WCA)

So for a long time, most decisions made have been those clear cut enough to qualify for ESA on paper evidence alone. Most of the "fit for work" decisions are stuck almost indefinitely in limbo.

If my theory is right and we ever get another provider willing to take on the poisoned chalice of ESA, (Which is looking increasingly unlikely by the day as time drags on) we will see a dramatic fall in the overall % of successful claims. However long that lasts, that won't be a clear indication of how many people get ESA compared to IB either. For a long time, there will be a disproportionate number of "Fit for Work" decisions as all the clear cut qualifying awards have already been weeded out. I wouldn't be at all surprised to see the current 73% success rate plummet to as low as 15-30%

So the real questions are when will the DWP find a new contractor and what are they doing about clearing the backlogs? Around 30,000 people will be compensated for unacceptable delays of up to a few months to their passport applications, when will the DWP compensate the 700,000 people facing unacceptable delays of up to a year to their very subsistence?

Sunday, 14 September 2014

When I read this article earlier in the week, I found it hard to believe that a doctor, in the UK in 2014 had actually put the words to paper. More so that anyone had given him the space to express them in public. First I checked that it wasn't an old article from the 40s or 50s. Then I checked it wasn't a spoof site. http://www.cps.org.uk/blog/q/date/2014/09/12/illness-as-a-career-choice/

But no. The author claims to be a currently practicing physician. It's hard to believe, in fact, that he isn't Iain Duncan-Smith in disguise.

Let's start with

"a common driver to ill health is the welfare state. In short, it appears that being sick has become a way of life and a career choice for a worryingly high percentage of the population."

A remarkably static 2.5 million people in the UK claim an out of work benefit due to sickness or disability. They are not the same people, rather people come on and off the benefit as conditions appear and subside. That's less than 3% of the population. Presumably our doctor author doesn't think ALL of them have simply adopted cancer or Parkinson's as a "career choice" meaning that less than 2% is a "worryingly high percentage" in his world. It may be best if we disregard any further maths related claims he makes.

He goes on to tell us that

"Two patients can have identical pathology but with striking differences in illness behavior."

Lets take a look at that shall we? Take one man in his mid 50s living in Surrey with diabetes. He has private healthcare, a comfortable home, a supportive family and can afford an excellent diet and membership to his local gym. His diabetes is under excellent control. Another man the same age with exactly the same pathology lives in Glasgow in poverty with no family or assets. He cannot afford to eat well and finds it very hard to exercise without support and encouragement. He becomes depressed and his diabetes is unstable and poorly controlled

Sadly, our doctor friend can only see the world through a medical prism, so none of those things matter. What's more, given his income, lifestyle and opportunities as a doctor, he is much more likely to identify with the first man than the second.

Now, I wouldn't want you to think that the good doctor is basing his judgements on anecdote alone. No, he refers to

"One informal survey of colleagues from around the UK placed the figure [of malingerers] at between 10% and 90%."

Phew, that's OK than. We have an "informal" survey with an 80% margin of error. I'd hate to think we were just making things up as we went along.

The next section of the article aims to make the case that we should return to a system in which the patient not only has no say in outcomes, but is actually not kept informed in any way. If a doctor has to show a patient the report he writes on their employability, he will apparently be too scared to be honest. Far better he should be able to write what he likes about the patient, whether accurate or not and the patient should have no opportunity to either see what is written or to confirm or deny it's accuracy. He is convinced we should return to the days of "doctor knows best" and clearly, he could never possibly be wrong. His opinion only affects the entire livelihood of the individual he judges, after all, why should they have a say?

He is certain that people do not complain because he or his colleagues ever get things wrong, but because they don't like their conclusions. Allowing a patient to see what he has written might cause them to disagree with him and that would never do. Clearly, the only reason they may ever disagree is because a comfortable life of luxury on a whopping £101 per week might slip from their grasp. He could never actually be wrong.

But the part that terrified me the most, the part where I stopped laughing at his archaic views and "quaint" paternalism, was in his 3 suggestions for improving the system of disability assessment at the end of the article. (Incidentally, he regularly conflates long term illness with disability, but I'm sure it was unintentional....)

His 2nd of 3 suggestions was that

"if a patient were wheelchair-bound but had full mental faculty then financial support would be provided to assist with mobility only if they were active in terms of work"

So let's say you have cerebral palsy or quadriplegia. In the world of our Dr Certainty, the only thing they need to get work is "full mental faculty". Whether they have constant infections or regular falls or seizures or uncontrollable limb spasms or any number of other related challenges to overcome is irrelevant. If they can think, they can work or they deserve to be prisoners in their own homes indefinitely.

Think about that a bit more. It also means that every one of those ppl he would consign to life of isolation and almost certainly great poverty, is able to get exactly the same education an able-bodied peer might get. Transport, access, and almost everything else in life most take for granted would have to be just the same for the person living with an impairment as for those who do not. It would have to take them the same amount of time to achieve comparable tasks. What's more, it would mean a society that never discriminates against employing a disabled person over someone without a disability, never allows disability discrimination in the workplace or place of learning, and that never indulges in hate crime or bullying. But Dr Certainty appears not to have thought of that.

So let's turn the Dr's own question back to him. How is it that 2 Drs with identical qualifications and clinical experience can come to totally different opinions of their patients? How is it that one can see the whole person, taking into account education, wealth, opportunity, mental state and family circumstance, while another can only see a diagnosis?

Perhaps if the DWP spent as much time weeding out judgmental, paternalistic, ignorant, potentially dangerous Drs as they do seeking mythical hoards of supposed benefit cheats, the health of the nation might improve dramatically.

Saturday, 13 September 2014

You know, when I published my post, "Plea for Help" this morning (full text below), I ummed and ahhhhed over setting up a fund page. I have never, ever asked others for cash unless it was to save someone's life or keep myself campaigning.

On balance, I think we probably DO need to save a life and so have set up this page XXXX

Promise me that if you can't afford to donate, you won't. Sharing the link or offering other kinds of support is just as valuable if not more so. But people are often frustrated they don't live in the area to physically help and want other ways of showing support.

But the cold hard fact is she needs money. To save her home, improve her diet and offer her a little security, some breathing space for a while. She admitted that her biggest fears were financial.

You can DONATE HEREby clicking on the bold text. Full text of original post :

"Plea for Help

As most of you will know I'm in hospital. To be honest, I'm not really much different in hospital than I am at home, except my pain is better managed and I watch more reality TV.

But I can't do everything I can do at home.

A fierce welfare warrior and Spartaci in Wiltshire has hit rock bottom. She is dear to me and has been a kind of "wing-man" to me from day one. She chose the role of defender and has done it below the line both here and elsewhere for years. Wherever my writing is met with ignorance and especially when it is met with aggression she is there.

But now she needs to be defended. Her health has deteriorated to the point of being virtually totally housebound, she has no diagnosis and her home and family are under threat. I fear she is giving up. She may lose her income, her transport and even her son.

I need good people in Wiltshire to step up and take care of her for me. In almost every way. I need :

- A good social worker to help her get the care she needs
- A good welfare advocate to get her the support she needs
- A good caring, supportive GP
- A good friend or two to give her the love she needs.
- Even a good gardner to give her back her garden, one of the few things that gives her some joy.

If I physically could, I'd be in the car myself right now, but I can't and I have no idea when I might be able to.

I need people who will say "You know, I'd like to actually do something to help." I need people who will see her through this like I would. I need people who will be her strength and her hope and not let her down until she's safe. I need people who will practically help her and be there for her and lift her up. A number or two she can call won't fix this, she's too low.

If you have the time, will and skills she needs, please email me on suey2y@gmail.com

Believe me, if you're one of the many people out there worrying about me and sending so much goodwill and support, know that you can help me by doing this. I'm incredibly frustrated I can't do it myself and worried for her. You can lift that burden for me by lifting hers."

As most of you will know I'm in hospital. To be honest, I'm not really much different in hospital than I am at home, except my pain is better managed and I watch more reality TV.

But I can't do everything I can do at home.

A fierce welfare warrior and Spartaci in Wiltshire has hit rock bottom. She is dear to me and has been a kind of "wing-man" to me from day one. She chose the role of defender and has done it below the line both here and elsewhere for years. Wherever my writing is met with ignorance and especially when it is met with aggression she is there.

But now she needs to be defended. Her health has deteriorated to the point of being virtually totally housebound, she has no diagnosis and her home and family are under threat. I fear she is giving up. She may lose her income, her transport and even her son.

I need good people in Wiltshire to step up and take care of her for me. In almost every way. I need :

- A good social worker to help her get the care she needs
- A good welfare advocate to get her the support she needs
- A good caring, supportive GP
- A good friend or two to give her the love she needs.
- Even a good gardner to give her back her garden, one of the few things that gives her some joy.

If I physically could, I'd be in the car myself right now, but I can't and I have no idea when I might be able to.

I need people who will say "You know, I'd like to actually do something to help." I need people who will see her through this like I would. I need people who will be her strength and her hope and not let her down until she's safe. I need people who will practically help her and be there for her and lift her up. A number or two she can call won't fix this, she's too low.

If you have the time, will and skills she needs, please email me on suey2y@gmail.com

Believe me, if you're one of the many people out there worrying about me and sending so much goodwill and support, know that you can help me by doing this. I'm incredibly frustrated I can't do it myself and worried for her. You can lift that burden for me by lifting hers.

** I have added a fund page if this an easier way to help for you. ONLY donate if you can afford to DONATE HERE

Friday, 12 September 2014

Every single time I'm in hospital, there will be an old lady in my bay that I fall in love with.

Way back in 1995, it was Gladys. Gladys would flirt with my Dad, every time he walked onto the ward greeting him with a loud "Allo Faaarver", offering to share her humbugs with him.

The NHS was in a very dark place indeed in 1995. After 16 years of Conservative erosion, staffing levels had fallen to the most dangerously low levels I've ever experienced and nurses were even striking in a last ditch attempt to win the battle for excellent health care, free at the point of use.

One day, just one student nurse was left on a ward of 22 patients. Without 2 trained staff nurses no controlled drugs could be given, patients screamed with pain, an old man fell by his bed and another patient had to help her lift him back up. The good nurses had long since suffered stress related breakdowns or given up their jobs, and only those who didn't really care how much their patients suffered remained.

A very few dedicated heroes, doctors and nurses worked straight shifts just to keep the NHS on life support. It wasn't unusual to meet doctors on 72 hour marathon shifts or nurses staying hours in unpaid overtime to bridge the gaps.

There was no-one to hold Gladys' drink for her or feed her meals. Dad and Dave took shifts just to make sure she got any fluids or nutrition at all.

The thing that unites these remarkable women is forbearance. Not once do they ever complain. Not once do they ask for anything, not once do they mention the often excruciating pain they suffer through. I've become a world expert at spotting it. Good nurses recognise that the strength of this generation - the generation who fought for our freedom - means they must always be sure they are getting what they need. You'll never hear them fighting for themselves, never. They apologise every time anyone does something for them, convinced they aren't worthy of the basic care and dignity my generation insist upon. I imagine they have never asked for anything for themselves, instead, dedicating their lives to helping others - their families, friends and lovers.

How easy it is to look through them. To forget that they loved and cared, just as we do. How easy to forget that they may have climbed mountains or swum oceans in those glorious days of vitality and youth. How easy to forget they may have been brain surgeons or explorers or olympians. How easy to patronise them now, as the broken and spent shells of their bodies belie the gifts of their past.

Very occasionally, I hear a member of staff speak to them with contempt. Perhaps tell them off as though they were little children or patronise them as though their brains had always been 95 years old. I've seen them dismiss worried life partners or leave them too long in their own mess - after all, they'll never complain will they?

We have a duty to this generation to understand their stoicism. To remember their great bravery, a bravery that thanks to them, most of us have never had to show. We have a duty to make utterly sure that their final days are lived in dignity and as much comfort as we can possibly ensure. We have to remember they were born in a time before antibiotics or heart transplants. They accept pain and misery we could never contemplate.

But our gift to them must be to provide for their needs even when they are so unlikely to express them. To realise that when they say it "hurts a bit" they are close to their limit. To realise that they would never dream of asking someone to feed or wash or dress them - the shame!!

I'm proud to say that almost every member of staff in this hospital do so admirably and with touching compassion and care.

But back in 95, we got a phone call from Gladys' family. She had been readmitted and this time, there was no "faaarver", no busy-body patient in the bed opposite. She had died of dehydration for want of someone to hold her cup and gently ease the straw between her lips.

Was it cruelty? Neglect? I don't believe so. It was understaffing. And we are on that same slippery slope again.

This stay it is Ivy* Ivy is dying in great pain. Sid* comes in every morning without fail at 8am, wearing his best smart blazer and his pork-pie hat, in order that she may nag him as she has every morning for the last 70 years. He combs her hair and holds her glass of milk and brushes her cheek tenderly as he says goodbye. As he turns to walk away, only I see the tear he tries to hide.

We can stop this Britain. We can demand the NHS we cherish. or we can let it descend into a living horror story. Again. It's up to us.

If only for the generation that gave us our freedom, please, don't let it slip away.

Wikio

Gadget

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About Me

I have a rare form of Crohn's Disease. I was diagnosed 21 years ago and have had many operations to remove strictures (narrowings in my bowel that grow like tumours) I suffer daily pain, often vomiting, malnourished and weak. I take mega-strong medications every day including chemo-style immuno-suppressants, opiates and anti-sickness injections. Sometimes I am fed into my central vein by tube, other times I can enjoy a nice meal out. I have children that I often can't look after and a husband who often looks after me.
Our lives are disrupted daily by the misery of a chronic condition.